CBT/GET vs massage therapy

[Levi]

A simple poll to get a feel for ME/CFS patients opinions about these two treatments. I see lots of published work by the CBT/GET crowd. But not much to go on for what may be a very useful treatment given the role that recent research is attributing to inflammation. There are some new scientific works regarding the efficacy of massage therapy and its anti-inflammatory properties. I will see if I can dig them up. This poll is just to gauge interest in this topic. Perhaps CBT/GET should be abandoned in favor of massage therapy treatments. I have never seen a comparative study of these two modalities.
http://www.buckinstitute.org/buck-n...duces-inflammation-and-promotes-growth-new-mi

Buck Institute faculty Simon Melov, PhD, was responsible for the genetic analysis of the tissue samples. “Our research showed that massage dampened the expression of inflammatory cytokines in the muscle cells and promoted biogenesis of mitochondria, which are the energy-producing units in the cells,”

http://www.hindawi.com/journals/ecam/2011/561753/

 

[George]

I would definitely go for the massage. For one thing helping the circulatory system with massage also helps to get things moving in the lymph. With the lack of energy for movement along with O/I problems this would help to bridge the gap of keeping the circulatory system moving important nutrients, oxygen and toxin's to where they need to be.

GET will just create more toxins and use up oxygen in the system if you go even a smidgen over your tolerance level. Nothing like putting more inflammatory cytokines into the mix. (snort)

CBT might be fine for helping folks get a grip on the catastrophic life changes but once you get passed that point you kinda need "biological" intervention. This outweighs GET in the positive category by about 20 to 1. (grins)

'Sup Levi? Hope all is well with you.

 

[Levi]

Hey George, saw Facebook post of yours recently, nice stuff. When you dial up any medical website about ME or CFS, you get this "the only known effective treatment is CBT/GET". Actual rates of improvement are dismal, if you factor in the way the statistics are juggled by researchers. I strongly suspect the regular massage therapy would work better for lots of reasons.

Only now are studies of the biomedical antinflammatory health benefits of massage being published. There are some methods that are key to avoid central sensitization issues with the bodywork, and special training may be necessary, but the potential is there. I have contacts in the massage industry and would like to put together a study that pits massage therapy head to head with CBT/GET for results. It would take a grant and lots of time and work, so I am testing the waters first. It would be nice to use a biomarker panel and test for cytokines etc. for all participants.

If the study were published, then all the websites could be changed to say "massage therapy" appears to be the treatment of choice, etc It would be nice to have something evidence-based so as to get insurance coverage for the therapy.

 

[ukxmrv]

I'd go for the massage as well but with

1. Home visits
2. oils or fluid that did not make me nausous
3. massage that did not trigger off PEM or was painful

 

[charityfundraiser]

Massage therapy has given me back a life in the last four months. From mostly bedridden for 5+ years to now doing activities almost every day with short lie down breaks. I was planning to write about after it progresses a little further.

I don't even know what to say. First a quack put me on heavy duty antibiotics for a year. Then I took Valcyte which is more carcinogenic than the doctor told us initially. Neither did much positive and negatives outweighed the benefits, some very negative. Both cost five figures (to insurance).

So far I've spent about $500 on massage therapy and the improvement I have had is unbelievable. A neck injury plus infection contributed to my CFS and I have had neck pain and severe muscle spasm (extending to shoulders and upper torso) the whole time. None of the doctors I saw initially suggested physical therapy. I asked about physical therapy and a neurosurgeon told me it wouldn't help. He wanted to do surgery on my spine.

Gee, $500 of massages would have saved 6 years of the prime of my life!!!

I do want to point out that it's not just any kind of massage. The kind that helped is orthopedic massage, mainly trigger point therapy based, at a sports medicine place, not a spa. Also Chinese massage from my tai chi teacher who studied at a sports university and learned how to treat sports injuries. The skill of the therapist does matter.

Also, you can do both CBT/GET and massage at the same time as I don't think a sort of self-CBT/GET actually takes any extra time. If the massage helps, you'll probably end up doing GET automatically, but also you may not even realize how much or fast the massage helped and how much you can do so some psychology does help get the most out of massage as well. There are similar cognitive behavioral stuff for other conditions such as sciatica and whiplash. It could be more palatable to learn about those.

If anyone is in the Silicon Valley and wants to know the massage clinic, PM me.

 

[Jenny]

I've been having lymph drainage massage (Perrin technique) once a week for 7 months now. I usually, but not always, feel a lot better after a massage and this often lasts for a couple of days. Then I'm back to my normal state. Overall I think I am very slightly improved on this time last year, but given the cost, I've got to assess soon whether it's worth it.

Certainly better than CBT or GET (but that's not saying much)!

Jenny

 

[Calathea]

Pretty much anything is more likely to be useful than CBT/GET, especially the way that those are applied by the medical profession. There are theoretically ways of applying CBT which are actually helpful, especially for the more recently ill, but they are almost never practised. So I am going with how CBT is used in practice here.

Personal experience of massage - had its moments but didn't do that much for me, and together with the trip to see the aromatherapist, too draining in the end. Quite useful during times of emotional stress. If I ever get enough money, I may look into getting my own massage plinth and having an aromatherapist do home visits. There are several things I have tried which are more useful than massage. And even that's not saying much, because there is so little which helps ME at all.

You're comparing a treatment which is most likely to range between "no effect" to "some use" to two treatments which range between "no effect" and "extremely harmful". I don't think it's that useful a comparison, to be honest. If CBT/GET were genuinely useful, you'd have results worth doing something with.